Dr. K appt/WHITE PAPER

[Worried_Dad]

This concerns me as well. Dr. K was our son's main PANDAS doc, and we have great respect for him and gratitude for what he's done for us. But we followed his original formula - IVIG and low-dose prophylactic augmentin - and our son relapsed worse than ever. We then tried 2 more rounds of HD IVIG 28 days apart. Helped a little, but not nearly enough. Not until we went to the "Saving Sammy" dose of augmentin XR did we see sustained, steady progress. Our son is now pretty darn close to 100% after > 1 year of high-dose abx. I really believe he would be struggling mightily if we had not maintained that dose for so long (especially since all of the rest of our family have elevated ASO).

 

So - no disrespect intended to a doc who has done tons of good for suffering children and the PANDAS cause - but I have to differ with Dr. K on this one. For our ds, long-term abx didn't cause a relapse; it seems to have finally prevented them.

 

 

Dr. K explained that he believes staying on abx long-term actually makes the patient relapse, or break-through faster..."

 

This confuses me a bit. Did he mean that for some, long-term abx will cause the patient to relapse and that for others, long term abx will help cure them faster? So each child's response may be different and fall into one of these two camps?

 

My child is on long term abx, so I want to know whether I should be worrying that, in the long run, they could make things worse. Or if I can relax because she is in the group that is being cured faster (fingers crossed).

 

Thanks for passing all this info from your appointment on to us. I love hearing the different doctors' perspectives.

 

Kara

[thereishope]

True. I am elated that people will be diagnosed faster, a trial of antibiotics even w/o a + strep test may occur more often, and the higher chance of being able to recover with antibiotics only snce it may be caught faster. However, as I look at it from own personal experience and what I need (yes, that's self fish but I need to look out for my own child too), we never had a hard time getting antibiotics when the exacerbation started since he has a documented strep infection for each one. For my family and our current personal needs, the goal is keeping him from getting sick again. I am nervous if that option is off the table for doctors to make on a case by case basis in the future. Hopefully, a small clause would appear giving doctors a loop hole to give abs if they feel it is needed in that specific child's case.

 

The important thing about the paper is that when it is published in the New England Journal and NIMH, pediatricians all over the world will have a reference for diagnosing PANDAS much more quickly. I am certain in will include abx as a first course of treatment, so never fear---abx should become more available quickly to those entering exacerbation. Also, as Sarah Jane pointed out it will hopefully help those who need IVIG able to get it easier, at the most helpful dosage levels, and with more help from insurance. The doctors are working very hard to help us.

Edited December 4, 2010 by Vickie

[mama2alex]

It sounds like you're not completely comfortable with what he advised. I have tremendous respect for Dr. K and we've had several phone consults and worked with him on our son's 2nd HD IVIG, but no doctor has all the answers on this. If there's anything I know now, its that mothers should listen to their own intuition and not completely defer to a doctor. You can always get a second opinion, or a third or fourth... We've probably talked to 15 doctors/health professionals since this started for us 1 1/2 years ago. One thing that has always given me pause regarding Dr. K is that he did not run comprehensive lab tests to rule out other illnesses/diseases. I'm not sure how he can state that only 2 out of his hundreds of patients had Lyme when he doesn't check them for it.

 

Hi everyone, this is very long, but I hope of interest and useful to many of you.

 

We had an appointment yesterday with Dr. K Friday Dec 3, and he mentioned the WHITE PAPER, so I asked him more about it. He said: (rough quotes here, not exact words b/c my pen ran out of ink) “Three of us are writing it, and we have to make sure every word is okay with everybody.” I asked who the authors were and he said, “myself, Sue Swedo, and James Leckman, and the rest are just listeners”. He said they call him frequently to discuss what he has seen in practice with diagnosis and treatment, so it seems like Dr. K is bringing his clinical experience to it, and perhaps Leckman, his research, and Sue Swedo has obviously been involved with PANDAS the longest. I asked when/where it would be published, and he said it would be published in the New England Journal of Medicine and up on the NIMH website whenever they get it ready.

 

He said the goal is to publish something that will help pediatricians all over the world screen for and treat PANDAS. He said that there are two things pediatricians need to understand and be doing:

 

• When a child comes in with strep throat, the ped should ask if any changes in behaviors have been observed such as ocd/tics/anorexia. . . etc. . .

 

• When a child presents with sudden onset of new behaviors, the ped should inquire about recent infection and check for strep.

 

He said that treatment of PANDAS is still being worked out, implying that there may be a bit of disagreement there, but they are really trying to get something formulated to help pediatricians diagnose PANDAS early and help kids locally and faster. He mentioned that on average his patients have been sick with PANDAS about 5 years and are very debilitated by the time they get to him. He said he is aware that it is difficult and expensive for parents to find and get to the few specialists that can treat these children.

 

We left his office with a “watch and wait” plan, as my son is a not debilitated case yet, and has improved greatly on fairly short-term abx. It was hard for me, as I wanted to walk out of there with a script for Augmentin. Dr. K explained that he believes staying on abx long-term actually makes the patient relapse, or break-through faster, and that we would be better off watching for the next exacerbation and then trying abx for a month. He implied that we might buy ourselves some time that way. He really believes this is best for my son, and kinda teased me by saying he could get me to shut up and leave him alone by just writing a script, but he doesn’t think it is best for my child. He did indicate that it would be typical for my son to have further, worsening exacerbations within a year, and eventually need IVIG, but that we shouldn’t rush into it. This is very hard to know we are waiting for this. . . . .I can only hope my son will be the exception.

 

Another interesting thing he said is that PANDAS patients should be evaluated on functioning in three ways: family, school, and social life. If one of those gets very debilitated, then it is time to advance the treatment to the next level. In our case, we will try abx again first, and if this is not sufficient, we will go for IVIG.

 

When we asked about Lyme, he said he doesn’t see it as a common factor, and that only two of his hundreds of patients have contracted lyme. He said one patient had lyme first, then developed PANDAS, and the other had PANDAS first and then contracted lyme. He mentioned the big meeting this summer and said two lyme experts were there. He said they discussed a lot, and that there are very specific/typical characteristics of PANDAS symptoms that do not occur in lyme, and he believes they are two distinct illnesses.

 

I’m struggling with this a bit also, as my husband had lyme in 1988, and took a long time to get well. He’s been well for 20+ years, but is now ill again and revisiting lyme treatment. I do wonder if there is any chance that lyme could be passed congenitally from the father, but it seems rare and unlikely. My son’s symptoms seem classic PANDAS, and we have seen quick reactions to impetigo in him.

 

We are going to take Dr. K’s advice and watch and wait for now. I am nervous, but also truly thankful for Dr. K and all he is doing to help us.

[LNN]

I am currently reading "Cure Unknown", and it is VERY interesting and useful to me. Only halfway through right now. If any of you haven't read it. . . .I do recommend it. There are interesting parallels with PANDAS and lyme, although in general, it seems like most lyme patients have headaches and painful swollen joints, none of which my son has ever had. It is possible to have only neurological symptoms from lyme, but there is usually overwhelming fatigue, which my son doesn't have. Sarah Jane, you've read "Cure Unknown" haven't you? What parallels did you see? Anyone else?

 

I read Cure Unknown last spring and was also struck by the political parallels to Pandas. And even tho my DS was still relapsing despite pex, despite long term abx, despite 2 months symptom free after prednisone tapers, despite the fact we weren't getting back to 100% anymore, I still didn't recognize him in the book (but my best friend did). I kept blaming relapses on "exposure" because I didn't see the 4 week cycle of lyme. He had a completely negative standard western blot, didn't have headaches, had muscle pain and brain fog (which I attributed to Pandas) but not joint pain, didn't have fatigue...So we did IVIG as a last ditch effort to put this all behind us.

 

Ours was a bad experience post-IVIG. Scrambled eggs for brains, rages, serious OCD, urinary frequency every 10 seconds...and it didn't stop. It was only after 9 weeks, when it was obvious something was still wrong, that we discovered the lyme. 2 months into lyme treatment, my son is experiencing remarkable improvements. I am dumbfounded. I can't even say if he's 100% because he got sick sometime in kindergarten and is now in 3rd grade - so I don't know what 100% might be. But whatever it is, I think I'm in for a very nice surprise.

 

I don't want to hijack this thread and focus on the lyme. But I did want to second the thought that this Pandas path is very similar to the one described in Cure Unknown and also point out that even though lyme has far more research behind it, there is still no clear cut path, no widely accepted protocol in the general medical community. So I do hope any white paper and any upcoming research helps move us a little forward. But the parents are still going to have to keep educating, keep pushing for treatments, keep fund raising. We still need to let Drs X, Y and Z know what happens to our kids after they leave the doctor's office and still need to respectfully examine what they do or say against our own experiences and keep supporting each other. My fear after reading Cure Unknown was that the Pandas community would be fractured in the same way as the lyme communities.

 

I thought Vickie's Youtube presentation was great. So much was done this year. But I'm personally looking at any white paper as another stepping stone. Something to build on. I think we parents still need to look at a 5-10 year plan and maybe start thinking of some new years' resolutions to see how we can collectively make 2011 even better for both the recognition of disease and for the health of our own kids.

[lyme_mom]

The famous Lyme pediatrician dr Charles ray jones told me "the eyes do not see what the mind does not understand." I dint think dr k would know if his patients had Lyme because he is not a Lyme soecialist. I think he is way off about Lyme and that with time this will be obvious. It is important to note that augmentin xr is also a cure for Lyme disease so u never know what u r really killing w it....

Cure unknown is a great book and beautifully written. I've read it almost three times because it is packed with good info. However it does not go into great detail about Lyme-bartonella symptoms that can look like pandas symptoms. Weintraub could write an entire book on the neurological signs iot Lyme. Yes u can have Lyme or bartonella or babesia without joint pain or fatigue. U can simply have one or several psychological symptoms too. I am not aware of the symptoms that are uniquely pandas vs Lyme- bartonella, etc. These diseases affect each person differently. In fact a mother may not show signs of Lyme yet pass it to her child in utero. I am sure dr k is a good man and has helped many people but I believe he grossly underestimates the role of Lyme-bartonella-babesia in these kids. The only way to be thorough is to get opinions from pandas and Lyme doctors or see a Lyme doctor like mine who treats a lot of pandas too. I understand dr b is a pandas dr who is also very Lyme aware because he is in Connecticut. Even two Lyme doctors can have differing opinions so second opinions are always a good idea.

Edited December 4, 2010 by lyme mom

[rockytop]

I do not what this is worth- but as the parent of a child treated for Lyme extensively (after a definite positive and also positive for babesia, a co-infection) and incomplete strep testing at onset of debilitating OCD (ASO only- no throat culture, no antiDNase B testing) I will ALWAYS wonder how these diseases may exacerbate (if they truly do)each other. I know my child's lyme/co-infection had to be treated- there was inexplicable fatigue, joint pains, night sweats and more- they all resolved with the wonderful treatment by a great, kind and wise LLMD (PM for information if you want)

I am sure that I will rile feathers- I believe that lyme is a very REAL disease, an epidemic in my area (northern virginia)but I am afraid that some may "miss the forest for the trees"- if I may be so bold. You should check for lyme- if you have the physical symptoms, or really think you may have it (or your child)-- but I think it is IMPOSSIBLE to check for everything and I also think it is POSSIBLE that lyme (or strep or HHV or whatever) may be coincidental and not causal in role of illness in humans. I do not know if what I have poorly attempted to explain makes sense to anyone. I am so grateful we have doctors who are commiting their vast experience and knowledge to finding out what has devastated our families and stolen childhood from these kids.

 

I am now the proud parent of 2 beautiful children with PANDAS. This horrible OCD has totally, completely disrupted our family. It may leave permanent scars in both the sufferers and their siblings. I weighed very carefully whether or not to even test for Lyme in the second. This child had a PANDAS onset post a very sick strep throat infection- about as classic as you can get. At this point, we have decided not to test. I could change my mind tomorrow.

So I have hijacked this thread (sorry!) and no one asked my opinion-- so I will be quiet now. Thanks for always being there, latitudes friends!

 

One more thing-- I would have given my right arm to be in that meeting. I bet those docs could have had a lot of right arms if only the invitaion had been extended.. Too bad.

[LNN]

Just to clarify - my DS was also "classic" Pandas - sudden onset tics/OCD and all other dozen symptoms w/in a week of confirmed strep/scarlet fever, not once but twice in 8 weeks. Later we also found lyme. I didn't mean to imply I "mistakenly" thought DS was Pandas but then he was really lyme. In his case, I think he had both - separately acquired illnesses that made each one worse and harder to eradicate. But I don't mean to start any debates. Just clarifying my own experience.

 

So as to bring the thread back to the initial concerns over treatments, long term abx have certainly been pivotal in my son's treatment(s) for both diseases and the whole family would be casualties if we hadn't been able to get them from courageous doctors. It's great that naysayers have recently published signals that the debate over the existence of Pandas may be drawing to an end. I only hope the debate over treatments isn't equally controversial and harmful to our kids (especially since DD5 is now showing more serious signs - of something).

[kimballot]

 

I thought Vickie's Youtube presentation was great. So much was done this year. But I'm personally looking at any white paper as another stepping stone. Something to build on. I think we parents still need to look at a 5-10 year plan and maybe start thinking of some new years' resolutions to see how we can collectively make 2011 even better for both the recognition of disease and for the health of our own kids.

 

I agree that the white paper is a stepping stone. That is what white papers are meant to be. They are pre-guidelines based on the evidence available.

 

Dr. Ks evidence from treating hundreds of patients is to be respected, but we need to recognize that it is a very low level of evidence. Evidence is ranked on a scale. (see http://www.cebm.net/index.aspx?o=1025)

 

Case series (which is a series of case reports - seems like that is what Dr. K has) is a lower level of evidence, and expert opinion is even lower.

 

You've all pointed out some of the problems with Dr. K's evidence. We don't know if patients left his practice and went on to another doctor if there was no standard follow up to ask (perhaps he did have a standard follow up and no one has mentioned it). We don't know how many have lyme if lyme was never tested. We don't know how many had a second or third IVIG with another doctor if it was never asked. This is not a criticism of Dr. K - he is being a doctor treating the patients in front of him based on research and his experience. He was not conducting planned experiments on the children, and he did not compare children that received treatment to children who knowingly did not receive treatment because he was practicing in the clinic - so he could NOT be UNbiased.

 

The white paper is a way to bring the clinical experience together with the research evidence. It will be a stepping stone... but at least we will all have a stone to step upon!

 

I am so grateful to the parents who have worked to make 2010 such a momentous year for PANDAS. I am so grateful to the doctors and researchers who have stood their ground - in the face of controversy and politics- to help our children. If we all stay united we can beat this thing. We can learn from the lyme politics of cure unknown and we can get our children - AND our grandchildren -the medical help they deserve. We do need to stick together on this one, though.

[thereishope]

Yes, for the record, I too have much respect for Dr K (even though I have never met him). When I list what PANDAS doctors I know of and would suggest to others, he is definitely on the list! I think when we, as parents on a forum and who have all experienced such life changing drama, we could find something we have an opinion on with any doctor. I look forward to this white paper. I'm sure it will be better than what we have now and will show us, researchers and doctors what needs to still be worked on. I sure hope it's out soon so we can put the speculations and guesses to rest. The ideal to have everything perfect when it comes out, but the reality is it's just the beginning.Like someone else I think on here said, be expected to still bring research, to have to be educated yourself on the topic, and to still question something that doesn't seem right for your own child.

[butterflymom]

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Edited October 5, 2015 by tampicc

[T_Mom]

whew--always good to come home to a quick-paced conversation on the forum--

 

I am going to throw this in to the abx discussion-- In response to your responses Vickie, what if the real effect of abx is initially (perhaps) to attack the attacker--but THEN it is all anti-inflammatory effects, in other words, full strength, long-term antibiotics are really holding down inflammation?

 

That was definitely the impression we got from Dr Perlmutter (an original Ps researcher) when our d's Pandas symptoms of OCD/ticcing would diminish with Amoxicillan...this happened more then once when Dr Perlmutter was prescribing the antibiotics for us and she clearly indicated (when I called to say could it be possible that the Amxocillan was making the OCD diminish within 48 hours...) She said absolutely -- and mentioned that Amoxicillan had been found to have anti-inflammatory properties and they had determined this at NIH but had never published it.

 

Clearly, the impression we got was that it was the anti-inflammatory effects of the antibiotic that were the benefit.

 

In that case, I hope the white paper is able to reflect the reality that many of us have seen -- that long-term, it is whatever we can get for, "anti-inflammatory insurance" (possibly Swedo's "prophylactic" antibiotics effect for example!) may be the critical KEY to day to day.

Edited December 5, 2010 by T.Mom

[EAMom]

 

 

He said that treatment of PANDAS is still being worked out, implying that there may be a bit of disagreement there, but they are really trying to get something formulated to help pediatricians diagnose PANDAS early and help kids locally and faster. He mentioned that on average his patients have been sick with PANDAS about 5 years and are very debilitated by the time they get to him. He said he is aware that it is difficult and expensive for parents to find and get to the few specialists that can treat these children.

 

We left his office with a “watch and wait” plan, as my son is a not debilitated case yet, and has improved greatly on fairly short-term abx. It was hard for me, as I wanted to walk out of there with a script for Augmentin. Dr. K explained that he believes staying on abx long-term actually makes the patient relapse, or break-through faster, and that we would be better off watching for the next exacerbation and then trying abx for a month. He implied that we might buy ourselves some time that way. He really believes this is best for my son, and kinda teased me by saying he could get me to shut up and leave him alone by just writing a script, but he doesn’t think it is best for my child. He did indicate that it would be typical for my son to have further, worsening exacerbations within a year, and eventually need IVIG, but that we shouldn’t rush into it. This is very hard to know we are waiting for this. . . . .I can only hope my son will be the exception.

 

Yup...I find this concerning as well and hope that the White Paper doesn't end up as "more evidence" for peds to stay away from long term antibiotics for PANDAS kids. Especially since it is clear there isn't agreement among PANDAS docs on this topic. And speaking from personal experience, as well has having read countless posts by PANDAS parents, it is my impression that PANDAS kids do better on long-term full-strength antibiotics (with IVIG or PEX or steroids added in as needed).

 

The other thing to keep in mind, is that realistically for many people, insurance will cover antibiotics, but not IVIG. So, if there is a chance that long-term abs prevents the need for IVIG, that gamble is worthwhile for most people.

 

Just as I don't like it when Beth M. give a "one size fits all" recipe for diagnosing/treating PANDAS (high titers, Augmentin XR, IVIG is too dangerous, etc.) I'm nervous about Dr. K's saying no long term abs (or only prophylactic once daily Augmentin for a year post IVIG), don't worry about Lyme, etc.

 

T.MOm....good point about the anti-inflammatory effects of antibiotics. I think there are 3 (or a combination of) possible benefits of long term antibiotics:

1) anti-inflammatory effects

2) prevent a NEW strep infection from taking place (just as with ARF)

3) treat lingering strep "hiding out" long term in the body (intracellular--sinuses, nose, wherever)...how long can strep hide out? It's not really known? Years? And bear in mind that PANDAs kids don't have a "normal" immune system so perhaps their immune systems aren't good at killing off every little last bit of strep...instead of attacking the strep, their immune system reacts by attacking their basal ganglia

[butterflymom]

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Edited October 5, 2015 by tampicc

[JAG10]

Perhaps the "others that are listeners" will have an opportunity to provide feedback prior to submission and articulate the concerns of interpreted limitations regarding antibiotics?

 

We have to wonder once the disorder becomes widely accepted and any treatment at all more mainstream, how much faster will progress in treatments occur?

[butterflymom]

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Edited October 5, 2015 by tampicc